PKU.com Community Discussion Forum Parent support moderate pku

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #6018
    Avatar of sandra
    speedinsndy
    Member

    My daughter is 9 and has moderate pku, I have been checking sites and have found many that deal with classic pku, but hardly no info on moderate. She doesn’t follow the diet like classic pku children but am wondering if she should be. Her doctors say its not necessary but I sometimes wonder from the way she acts and she has a very hard time in school. Anyone have the same prob. I notice in some of the other forums the things that the people who have been off their diets say they feel and act are very similiar to her.
    Any thoughts

    #6020
    Avatar of Breanna
    BreaMarie91
    Member

    Hmm, if you ask me that does sound alittle bit fishy. By moderate you mean Hyperphe right?
    Anyway, was she ever on the diet or no? Maybe you could speak with your doctor about getting a blood tests done to see what her Phenylalanine level is. If it doesn’t come back between 2-6mg/dl or 120-360umol(I think that’s what the bigger unit is) then she probably should be on the diet.
    If your doctor won’t do this for you, then get in contact with any other doctor in the area. In all honesty it’s your daughter we’re talking about, so if your concerned then it is important weither or not your doctor says it’s not. Does she see a specialist and/or and dietitian/nutritionist for her PKU? If she does maybe you should take this up with them.
    I hope this helped alittle bit. nBreanna 16 w/CPKU

    #6031
    Avatar of Sarah
    BraelynMom
    Member

    hey i dont mean to be nosey but what does that consist of like what does your child have to do then i didnt learn about that kind of PKU, im just wondering.
    I have a daughter who is turning 12 months and she has Classic PKU i was just interested in what u were saying.
    I would have to agree with bre though, bc if shes acting weird i would talk to your dietition and genitics doctor about it. I dont know how she would have been miss diginossed but im sure they will try what ever is possible for your child to get better!!! nSarah

    #6032
    Avatar of Breanna
    BreaMarie91
    Member

    Sarah, nDo you mean what is Hyperphe? Hyperphe is pretty much just a mild case of PKU. I think they base weither you have hyperphe or classical PKU off of how high blood levels are when they do the newborn screening (but I’m not positive). Hyperphe and Classical PKU are basically the same thing except people with Hyperphe are generally allowed more phe. So some people with Hyperphe are allowed so much phe that they really don’t count what they eat which I think might be why Speedinsdy’s doctors told her daughter not to go on a diet. If they think her daughter has a really high phe tolerance then they might not need her to be on the diet…but if she’s got these problems then she might not have as high of a tolerance that her doctors think. nBreanna

    #6033
    Avatar of Sarah
    BraelynMom
    Member

    Oh ic yea i was really only told about what braelyn had and that was it but thanks for replying to me. so i have a another question for you! You said a while ago that you dont even wanna eat meat bc u’ve never had it so you dont wanna try it.. well does everyone eat like that at your house like eat meat and stuff in front of you and your sister or does everyone pretty much eat the same?? I just dont know what to do its like braelyn always wants to eat what im eating and now that shell be a yea in like 2 days and have to start feeding her actual foods not baby foods i dont know what i can give her im not a big cook and its like i have to cook her something from scratch all the time so i dont know what to do. But i never really come on here so i prolly wont get your answer for a while unless you would be nice enough to send me an email bc i never come on here anymore i dont ever have the time to anymore.

    #6034
    Avatar of Sarah
    BraelynMom
    Member

    omg i wasnt supposed to put that on here, im sorry i hope i dont get into any trouble SORRY!!!!!

Viewing 6 posts - 1 through 6 (of 6 total)
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